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    • #18341
      Paul met Debbie
      Participant

      This morning I looked at my medication cabinet, from where I run my little home pharmacy.

      Suddenly I noticed a shift. The left section of the closet where I keep my anti-inflammation drugs, had advanced up to the middle of one shelf. And complementary, the right section where my antibiotics (anti- infection) drugs reside, has receded down to the middle of this shelf. How fascinating!

      I clearly remember times where I stored and regularly ordered and used many types of antibiotics. Simple antibiotics, like doxycycline ad macrolides, to be used continuously for keeping the bugs compliant. More heavy antibiotics, to be used at times of exacerbation, to be used to kill the bugs when not compliant any more. Fluoroquinolones (like Ciproxin), amoxicillin with clavulanic acid (Augmentin), flucloxacillin (Floxapen), cotrimoxazole (Bactrim). At times I nebulized tobramycin or other inhalable antibiotics.  And even occasionally I needed IV antibiotics, the real poisonous stuff like piperacillin/tazobactam (Piptazo/Tazocin), Cephalosporines  (ceftazidime – Fortum), or meropenem (Meronem/Merem). There was even a difficult period where I needed an IV every two months.

      And in those times, I hardly used any anti inflammatory drugs, only beclomethasone for my nose to prevent polyps from growing back after many ENT surgeries.

      But times changed, and the notion increased that infection and inflammation are two sides of the same coin, so one cannot just pull on one string, but needs to address both sides of the equation. After all, infection is just the start of a cycle, and it is mostly the inflammation that causes us to experience the signs of it; inflamed tissue is also more susceptible for (re) infection, so this is a vicious cycle that needs to be addressed at both entrances of the process. Enter Zen from there.

      In CF, it is often the (innate) inflammation where the problems starts, which attracts bugs to start a party of infections, which increases inflammation etcetera.

      I began to inhale steroids as well, Becotide or Seretide. I started using a small dose of oral prednisone daily, which also improved my energy by elevating the blood sugar mildly. I discovered by accident (literally, I broke some ribs and needed a painkiller for a couple of months) the strong anti-inflammatory effects of Diclofenac in 2015, which I use daily in a low dose. This enormously decreased my need for antibiotics (no more IV’s since). I discovered that a low dose of levocetirizine (Xyzal – anti histamine) every other day also calmed down my airways noticeably (I have no hay fever by the way, but still it worked). And recently, because of Trikafta, my eyes became slightly inflamed and I upped the doses of levocetirizine (Xyzal) and added anti histamine eye drops to the equation, which helped reasonably well.

      All in all, the focus to control the irritation of the airways due to CF shifted from anti-infection drugs (antibiotics) to anti-inflammation drugs considerably. So much so, that presently I don’t use any antibiotics anymore since Kaftrio (trikafta), but the need for anti inflammation is still there or even increased. This also improved the susceptibility of my airways to antibiotics, so when I need them, they work swiftly, even in normal doses for shorter courses of the standard stuff. Since starting Kaftrio in August 2021, for eight months I only had one mild exacerbation (only fever, no airway trouble), which easily receded after taking a two weeks course of Bactrim. This I think is an improvement by all standards. Fortunately, medical science has also seen this development and the number of available anti inflammatory drugs is slowly increasing, and many more are in the pipeline, specifically tailored to the needs of pwCF, where inflammation works in a very peculiar way because of the faulty electrolyte balance in the cells of the body.

      What are your thoughts and experiences with this development? Perhaps we can share our expertise, that could be interesting and helpful!

      Cheers, have a quiet Sunday,

      Paul

      Ps if we answer to this thread by one reaction per day, we can keep this subject in the picture of this forum and prevent it from being drowned away in the current  #31DaysOfCF tsunami (just an observation, not a judgement).

       

       

    • #18345
      Tim Blowfield
      Participant

      Yes: Inflammation and infection do go together. Infection without inflammation is generally harmless. Normal Flora is just that. Bacteria that exist in a commensual way. Inflammation is the body’s reaction to a foreign substance/organisism. The body may react appropriately, inadequately or excessively. If inadequate the organism may not be controlled and antibiotics be required. If excessive and anti-inflammatory may be required. Even it appropriate either or both may be required. The bodies immune system is complex. may be overwhelmed,  too weak or just right. It may go off in a tangent such as when Sjogrens Syndrome occurs. All very complex. With Trikafta we can expect fewer infections an thus less stimulation causing inflammation, thus less need for antibiotics and therefore lower risk of bacteria becoming resistant (a serious problem).

    • #18347
      Jenny Livingston
      Keymaster

      Use of antibiotics is almost nonexistent for me but as mentioned here, when I do need to use them, the results are quick! In January 2020, we were able to successfully treat a small spot of pneumonia with a dose of oral antibiotics. Later that year, another course for a sinus infection that began to move to my lungs. But I don’t believe I’ve needed to take any since then! (A realization I’m only now having.) I also find that my lungs are easily irritated and chronically inflamed, but I don’t need to take NSAIDs for inflammation and aches in my body or sinuses nearly as much.

      Regarding susceptibility to antibiotics, this is one of the coolest things about Trikafta to me! Previously, I cultured staph (sometimes MRSA, sometimes not), and three strains of pseudomonas, two of which were colonized. In recent cultures, there has been much less growth (only one detectable strain of pseudomonas) and much lower antibiotic resistance. It feels a bit like wiping the slate clean.

      • #18351
        Paul met Debbie
        Participant

        Good to hear you are having similar experiences with antibiotics, Jenny.

        I remember we talked earlier on the forum about your new trikafta dosing, but can’t find the post and don’t exactly remember on what dose you are right now. Would you mind enlightening me? I am currently trying a lower dose too, which is every other day I take only 1 trikafta in stead of 2. But so far this didn’t change anything yet, my eyes are still as sensitive. Fortunately, my airways still feel as good as with the full dose.

        • #18365
          Jenny Livingston
          Keymaster

          Paul, I take half the morning dose each day (just one pill) plus the regular evening dose. It seems to be a good balance for me right now.

        • #18367
          Paul met Debbie
          Participant

          Ah yes I remember now, Jenny. This sounds like a good scheme, and more regular than skipping one trikafta every other day. I always try to use medication evenly spread to not confuse the body, so that it can accomodatie to an even situation. Perhaps your scheme is what I will end up with as well. I will keep us posted.

    • #18373
      Tim Blowfield
      Participant

      Yes. With most drugs reducing the dose is better than skipping doses. Various factors need be considered such as how long the drug is active in the body and the levels at any one time. The former is generally reported as the ‘half life’ – that is the time it takes for half the drug to disappear. The other is usually  reported as a curve and also as the time above the effective level and the peak level. These factors determine the amount and frequency that a drug should be given. A drug may be repeated after the level falls below the effective level or before to maintain the level in an optimen range. I am not sure what these factors are with Trikafta (TK) but an example  from another old drug is Digoxin: it has a very long half life of about 5 days and a quite narrow space between effective and toxic levels. It is often given as an initial loading dose followed by daily or even twice daily smaller ‘top-up’ doses to maintain the levels in the optimal ranges.  With TK  much is yet to be learnt and the optimal dose may vary from person to person. Of the 3 drugs in TK Ivacaftor has a shorter half life that the other two and so is given twice a day.

       

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